Håkanson Cecilia, Öhlén Joakim, Kreicbergs Ulrika, Cardenas-Turanzas Marylou, Wilson Donna M, Loucka Martin, Frache Sandra, Giovannetti Lucia, Naylor Wayne, Rhee YongJoo, Ramos Miguel Ruiz, Teno Joan, Beernaert Kim, Deliens Luc, Houttekier Dirk, Cohen Joachim
Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal University College, P.O. Box 11189, SE-10061, Stockholm, Sweden.
Department of Neurobiology, Care Science and Society, Karolinska Institutet, Huddinge, Sweden.
Eur J Pediatr. 2017 Mar;176(3):327-335. doi: 10.1007/s00431-016-2837-0. Epub 2017 Jan 9.
Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys.
This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. • In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.
跨国界了解儿童死亡地点对于卫生服务系统提供高效且平等的儿科姑息治疗至关重要。这项基于人群的研究旨在调查患有复杂慢性病（CCC）的儿童的死亡地点，并探究死亡地点与性别、死因及国家之间的关联。该研究使用了2008年在11个欧洲和非欧洲国家死亡的所有1至17岁儿童（n = 40,624）的死亡证明数据。进行多变量逻辑回归以确定死亡地点与其他因素之间的关联。在这些国家中，1至17岁儿童中有24.4%至75.3%死于CCC。其中，6.7%至42.4%在家中死亡。在比利时和美国，除恶性肿瘤外，由CCC导致的所有死亡在家中发生的可能性较小，而在墨西哥和韩国，神经肌肉疾病导致的死亡在家中发生的可能性比恶性肿瘤导致的死亡更大。在墨西哥（OR = 0.91，95% CI：0.83 - 1.00）和瑞典（OR = 0.35，95% CI：0.15 - 0.83），女孩在家中死亡的几率明显低于男孩。
本研究表明不同国家之间儿童死亡地点存在很大差异。这些差异可能与卫生系统相关的基础设施和政策以及与死亡地点相关的文化价值观差异有关，不过这还需要进一步研究。本研究中发现的模式可为国际儿科姑息治疗项目的发展提供参考。已知信息：• 缺乏针对不同国家患有CCC的儿童死亡地点的基于人群的研究。• 跨国界了解儿童死亡地点可为卫生保健系统提供信息，以便高效且平等地提供儿科姑息治疗。新发现：• 患有CCC的儿童死亡地点存在很大的跨国差异，在一些国家家中死亡的情况很少，而医院死亡通常最为常见。• 一般而言，神经肌肉疾病和恶性肿瘤导致的死亡比其他CCC在家中发生得更频繁。
